hello...we're soon to be new parents....

[themorinfamily]

Our names are Kevin and Ashley and we just found out yesterday that our child, Kayson, has Spina Bifida and we just wanted to reach out and say hello. We are currently 23 weeks along in our pregnancy. It was very difficult yesterday but we're feeling much better today. Any advice, support, or information would be much appreciated. Thanks, Kevin and Ashley

[janjanwhit]

This is the worst part. Pregnancy is horrible. Doctors cannot predict anything basically. They can tell you what parts will be effected but until baby is born nobody can really tell how severe or mild each is effected.Doctors will always tell you the worst possible case senario too.
I can guarantee you will love your child and you will cope no matter what happens. Its a long wait to find out whats happening from when you find out. Talking on here with people actually effected helps a lot, as well as looking at our photos. The doctors dont have sb so dont really know what its like to live with it.

[themorinfamily]

thank you, just hearing that makes us feel much better. We're ready to love him no matter what.

[janjanwhit]

I got really stressed during my pregnancy because i believed what ever the doctors told me. When he was born he was completely different to what they had said. If they had told me what he was really going to be like when i was pregnant i could have relaxed! What made me feel better was looking at the photos on here of kids with sb. They are so cute and just lovely kids. Its hard to imagine your baby as a baby the way the doctors describe babys with sb. I thought i was growing something horrible in my tummy. He was and still is super cute and a lovely little boy - just like all the other kiddies on here. When i saw him I just knew he was meant to be and it would be ok. :)

[Tawny]

Hi Kevin and Ashley! And welcome to the site! I can't even begin to tell you how much this networking site has helped me...especially during pregnancy. I have a 4 month old son named Joshua who has spina bifida at the L2 level. He is shunted for hydro and we cath him 4 times per day. I was devastated when I found out about his diagnosis. At the time I was 20 weeks prego and the doctors painted a very grim picture in front of me. Pregnancy was definitely the hardest part. Since he has born he has surprised us in so many ways. He is a beautiful and healthy baby. he has had three surgeries but he has come out of them beautifully. He is functioning better then doctors predicted and should definitely walk someday. We are taking him to therapy twice per week.

Point is...hang in there and try to look at the positive...you are about to have a beautiful baby. It's going to be a tough road ahead but you will get through it and in 8 more months you will be posting the same advice to some other new parent who is in the same boat.

Good luck and congrats!

Tawny

[Tawny]

Also...you can check out our blog to read more about Joshua's journey. the first three weeks were crazy and then things slowed down a bit. We also have a lot of pictures posted.

www.ourluvbugs.blogspot.com

[excitedmom]

Welcome! I just joined this site about a month ago, and I can tell you it helps so much to talk to others that can relate to you. I will be delivering my daughter Zoey on Tuesday :) I found out about 5 wks ago at 32 weeks that she has spina bifida. And as the others already stated pregnancy is so hard. All the unknowns and wait and sees. So just enjoy your pregnancy while it lasts, and good luck! ;)

[dkagami]

Welcome and congrats on your baby boy :) I found it helpful to read about as many kids as I could with Spina Bifida. It helped me to prepare for the road ahead and it's true pregnancy is the hardest part. Once I held Kaiya in my arms I knew everything was going to be okay :) There is also great support on Facebook now as well..send me a PM if you want to add me :)

[janjanwhit]

Fergus is 20 months old now. He is L3 but functions at L4. He had a vp shunt put in at 5 months old and we have had no problems with it. At one year he had his clubbed feet corrected, his undescended teste fixed and skin tag from his back closure removed all during the same op. He started crawling at 18 months. He wears splints to help with ankle control. He is not cathed at all and has no meds. The only thing the doctors were right about is that he has no bladder and bowel control. He is expected to have an op for that before he goes to school and then he should be able to wear normal underwear. He is expected to walk. In saying that we dont really know for sure and if he doesnt it wont bother me at all. When I was pregnant I was very concerned over if he would walk or not but when I first saw him it did not matter anymore. With a child that has sb you just have to wait and see. I was told about 3 months ago he would never crawl and should invest in a power wheel chair. A couple weeks later he was crawling!

[janjanwhit]

Btw this is THE BEST forum and source of info on the web! I was on the net hours everyday since I found out about Fergus and this is the best out there.If I have questions or want opinions I ask here before I ask his doctors as I actually find people on this site to be more accurate and have better more practical answers.

[n3rdchik]

Welcome! :). You are in the right spot for good info and superior support.
Tell us more! Where are you located? Is this your first?

[themorinfamily]

My wife and I are located in northern Arizona. We have a 7 year old (he is my step son). He's great and is very excited to have a little brother. We have been learning a lot in the last 3 days since we found out Kayson has SB. My wife is currently 23 weeks and 4 days into her pregnancy. From what we understand so far it looks like the sacrum is involved and possibly L5. We have only had an ultrasound and are waiting to see if we get into the MOMS trial. I'm also learning more about the trial and we think it is a good idea to try it. Listening to people tell their stories is scary but also comforting to know things will be okay. We are definitely still a little shocked, but are ready to love him no matter what happens. Thanks to everyone who has wrote to us, it means a lot to us. I'm sure you'll hear a lot from us in the future.

[Makennasmom]

Hi Kevin and Ashley. Congrats on baby Kayson. I know it can a bit overwhelming, but it sounds like you guys are doing great. I know that I cried the day after we found out about Makennas SB. The doctors told us about everything that could be wrong with her, but they were very supportive about her as well. (they did a new ultrasound every other week and was never able to tell how high the lesion was) I was very fortunate to have the doctors that I had. Many of the women on here didn't have the same expierence. We were still nervous and worried through the whole pregnancy though. I wish that I had found this site while I was pregnant, I think I would have worried a lot less. Makenna is 20 months old and is such a blessing to our family. Everyone that meets her comments on how happy and smart she is.
Sorry to ramble, keep us updated and let us know if decide to do the MOMS trial.
Keep us updated and let us know if you get to do the MOMS trial.

[hope&faith]

Just wanted to say welcome, you are in a great place to information and support. the diagnosis and pregnancy are by far the hardest part. I remember being very overwhelmed and scared when first learning that my baby would have SB. He had a tough start but is doing amazing now. He and his brother are the absolute light of our lives!! Wish you all the best and feel free to ask any questions or just keep us updated on how you are doing!!
Holli

[Cailin]

Welcome & Congrats on the baby! I found out at 22 weeks pregnant that Tanya would have SB. She's 2 now and is such an amazing kid. We never look at her like she has a disability, we are amazed by all of her abilities! Tanya is L3. Your little one will bring so much joy & closeness in your family!
Cailin

[themorinfamily]

thanks to everyone for the support. We had yet again a long full day at the doctor's office. We're one step closer to getting into the MOMS trial. We have to do a phone interview tomorrow and then possibly fly to Philadelphia for the full screening. Not sure when all that will happn. We're 24 weeks so it has to happen sooner than later. No matter what happens we are completely happy and ready to have our son enter the world. We'll update you all soon. Thanks again.

[abbysmum]

Welcome Kevin & Ashley; some friends of mine are in exactly your place, having recently had a diagnosis themselves. I hope they will come to this forum and you can travel the road together; company helps!

For our story, Abigail is almost 18 months old now and stunning us daily with her cuteness. She is adored by her two bigger brothers and it's clearly mutual. She has therapy weekly and has learned to scoot around the floor in a part commando crawl / part dolphin manner which is much faster than it sounds! We cath a few times per day too but Abby is really healthy and lots of fun.

I agree with the others that the pregnancy & the not knowing is the hardest part. Once your little man is born it'll be a lot easier.

Welcome!

[Krit]

Hi guys, and congratulations on your beautiful boy!

I don't have much to add apart from a welcome and a big hug- the hardest part is the waiting.
The fabulous Misty has a blog with this wonderful post:

http://www.mistyboyd.com/?p=32

Don't know if anyone has sent it to you yet... it says it all much better than I ever could!

We are all so glad to have you here.

xx

PS - How was Jason's football and how is the info for the MOMs trial going?

[TysaDawn]

thank you, just hearing that makes us feel much better. We're ready to love him no matter what.

Your attitude toward this is great.. I know how hard it hit me when I first found out. They are amazing children!!! One thing I suggest you do it take a look at some of the blogs & journals of all the beautiful children on here who have spina bifida. You'll find that no child is the exact same though there might be some similarities, but they all are wonderful, strong, amazing children!!!!

Congrats to you both & your family for your little blessing!!:26aa:

[themorinfamily]

so we're off to Philadelphia to learn more about the MOMS trial and if we get accepted, decide wether or not to go through with it. We fly out Sunday, Happy Halloween, and we have two long full days ahead of us. Yay, we get to relive the last week all over again......it never gets easier no matter how many times you have to sit there and here all that. I'll try to keep everyone updated from Phily, and we'll talk to you soon.

[Nettie]

Good luck! And please do try to keep us posted?

[abbysmum]

it never gets easier no matter how many times you have to sit there and here all that.

It will :). The emotions you felt that day may come flooding back every so often but mostly it just becomes background info. I hope you have a great time and learn loads.

[themorinfamily]

so we are back from Philadelphia. We ended up getting into the MOMS trial and we are in the post natal surgery group. We did learn a lot and it was also the longest three days of our lives. It was really hard to listen to everyone all over again and very intimitading meeting doctor after doctor all day. In the end we're positive everything will work out and we decided to go on with the trial because these doctors will take very good care of Ashley and Kayson. Anyone who wants to get into the trial I would recommend at least meeting with them and learning from it. The prenatal surgery is very scary and can lead to a lot of complications that we probably wouldn't be ready for so we're okay with the outcome. At first you want to do everything you can for your child and then you learn that the risk/benefit may not be worth it. But, maybe it is....you never know. That's the beauty of a trial isn't it? Anyway, we're back in Arizona until January 24th when we go back to Philly to deliver. We'll be in Phoenix every so often from here on out and we'll keep everyone updated on Kayson.

[LisaJoy]

I'm glad it was a good experience overall; and I knew you'd learn a lot.

[excitedmom]

Congratulations! And I just went through what you are going through. As the others have already said, pregnancy is the tough part because youare going to worry about a lot of things. But if I could tell anyone the most important thing about expecting a baby with sb it is to enjoy it and take each day when it comes. My bg was born two wks ago with sb and hydro. She had her back closure a day old and shunt placement at a week old. She is doing fantastic! She lightens up my world everytime I see her! Good luck with your journey and feel free to check out my pics of my little sunshine :)